Astrology nerds... I was just getting into some chiron content in the chani app and was like, huh chiron is the planet of healing and it's been in my rising sign of Aries for 8 years? When did this happen bc my health collapsed 8 years ago. Feb 18, 2019... The next day I was diagnosed with ME/CFS 🤯

One thing about me is that I'm incredibly nice to human service representatives and very rude to AI agents

Express scripts is being extremely slow and difficult on filling my cromolyn prescription so I started rationing and lowering my dose and was up from 4-7am with diarrhea. May I transfer this GI distress upon all of their executives and shareholders 💫💩💫

I love that it's 2026 and I'm doing the same stuff I did in 1999. Playing Pokemon, fangirling, reading books. Becoming disabled in my 30s has allowed me to rediscover the whimsy and for that I'm grateful. The symptoms can suck it though

I've been watching old seasons of survivor getting ready for 50 and I just finished 42 and idk this might be a hot take but Maryanne is my favorite person ever to be on this show, what a joyous human

Today's brain fog description - the paddle boys who play soccer What was I trying to say? Foosball 😂

I'm getting a headache listening to tales from earthsea audiobook because the narrator is doing a voice that sounds a lot like rfk jr 🤢🤢 also she keeps pronouncing ate like ett and I hate it 😂

I'll never get over receiving a new diagnosis because a provider finally did more than just look with their eyes and tell me I'm normal. Today's new diagnosis - deviated septum. I'm 37yo and have had symptoms since age 11. Today is the first time a Dr ever scoped my nose. Being a woman is so fun /s

Any recommendations from the MCAS mind hive on breathe right strips type of product that can help with night time breathing? I've also tried those plastic things that go inside your nose but they hurt my tiny narrow airways

My infusion company will not send me green caps to cover the line for my port. I've been relying on the stash I had from the prior company and friends sending me caps. Now I'm out again. Any advice on how to get them to send me caps? Or where I can buy affordably? They're not cheap

Husband: what should we do this weekend Me: idk it's the equinox soon we could celebrate that Husband: so witchcraft this weekend? Me: hell yeah! 🍂🔮(Falling leaves emoji, crystal ball emoji)

Someone called me today just as I woke up, & ambushed me into meeting a healthcare provider. I usually fawn but I went into fight mode today. 1-I'm not your monkey who will do a little dance and sing all my diagnoses to you and your friends 2-I have a lot of medical trauma & this is traumatizing

Friends with ME/CFS! The incomparable Lenny Jason is working to develop consensus on a research definition and severity scales to use in studying ME. He needs your opinion! Takes ~15 mins but you can save and come back if you need a break. If you could also share this, that would be a huge help!

Can we reach consensus on an ME research case definition?

redcap.is.depaul.edu

Looking for resources and/or advice about starting a 501c3 in the US and how to make it international. Any tips?

I’m going to say this louder this time: if you are lying about having a high-risk condition to get a Covid vaccine, all good, do what you want to do BUT show some actual goddamn respect for people who *actually* have that condition and start masking.

Me and my friends, trying to have our needs met in this economy like:

Miranda@crookedneighbor.bsky.social · 12mo ago

And I guess this is a lot of what I talk about in my advocacy, but who tf has time to pursue this kind of extremely specialist care when they don't have basic needs met like housing

Can anyone recommend an #MECFS & #POTS knowledgeable doctor in the DC area?

One of the funny things about living with a rare disease is sharing knowledge about that rare disease and friends saying "I thought everyone had that!" Today's case - sacral dimple in tethered cord. No babe, most people don't have that

I'm not surprised but I am constantly amazed by how much better care my cat receives from her vet than any human I know receives from the US medical system

I guess AI is doing autocorrect now because it keeps changing in to on and on to in automatically and it doesn't make any sense

Every time I see my PCP she tells me to write a book. Because she's getting more and more young people with the same disease cluster as me and they're telling her things like, "id rather die than live like this." People with ME, POTS, EDS, MCAS, etc deserve better.

I just wanna knit but my hands won't stop sweating and then it's sensory hell. Why can't you chill out dysautonomia symptoms 😭😭

#pwME we really need to talk about the sanism and ableism within our community and unlearn that shit. Yes, #MECFS is biological. And psych conditions can be comorbids. We are ostracizing and harming pwME and psych comorbids who don't have access to adequate physical or mental healthcare

PSA Neck gaiters are not masks. Neck gaiters are not effective at stopping the spread of airborne viruses. Masks, especially well-fitting ones are effective at preventing infection. Conflating the two is bad because it can encourage politicians to ban masks for the general public.

My outdoor walker is now home to a birds nest and eggs! Guess I'll be using my cane in the backyard for a bit, but I'm so happy discovering this! Any ideas what kind of bird it could be? We have lots of finches and sparrows around. It's not muddy like a swallow nest.

It’s been said before but the more “I didn’t vote for *this*” stories we get the more I’m convinced the pandemic acted as a Mass Forgetting Event. A Great Reset. An actual Memory Hole.

The survivors guilt of finally having improvements in #MECFS symptoms and moving towards moderate while most #pwME are progressing in severity 💙😭

Happy #BlueSunday #TeaPartyForME I had some homemade blueberry lemon scones with blue spirulina icing and a cappuccino. I gave to @openmedf.bsky.social today 💙 Please give to #MECFS awareness and research funding here: the-slow-lane.com/donation-pag...

Why does “learning to live with covid” mean accepting repeat infections as inevitable? Why does it mean throwing the vulnerable to the wayside, unsafe healthcare & mass disability? That’s not “living with it”. That’s giving up We need to adapt. Clean air, paid time off, masks in healthcare.

The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/...